When Hope Becomes Hopium

TL;DR: I have cancer again and maybe for the rest of my life but maybe not IDK.  

Something I learned very early in a non-small cell lung cancer diagnosis is that, while they may stage you according to a 9-step classification system, and type you according to dozens of genomic differences, there is ultimately a single dividing line that medicine uses to group all cancer patients into a simple binary: Can we cure them? 

(Cure rates in lung cancer are comparatively low. Abysmally low. Terrifyingly low. Almost 80% of NSCLC patients die from their disease within 5 years (compared to around 10% of breast and prostate cancer patients).  (Insert mandatory disclaimer about the usage of statistics to predict individual outcomes, and related blog post here.))

For many institutions, this is also informally expressed as "Can we cut it all out?"  aka "surgical resection".  The gold standard, despite its relatively high failure rate in lung cancer, and only available to the minority of patients who are diagnosed when the cancer is still contained within one lung and maybe some nearby lymph nodes. Beyond that, you're into systemic, "metastatic" disease. The dam has burst. Containment has failed. Any part of your body could be harbouring a mutant, murderous fugitive cell. We'll treat you, sure, but it's only a matter of time before one of them gets you. 

So my diagnosis (first at 2b, then 3a by the time treatment actually started) was delivered with a message of hope: I was a candidate for a cure. It would mean aggressive treatment. I gave over eight months of my life to being poisoned, irradiated, chopped up, poisoned again. And as treatment took its toll and I rapidly lost parts of my old identity - as a professional, an active parent, an athlete, a performer, a volunteer, a willing doer-of-things - I clung to this new one. I'm a SURVIVOR. I can be CURED. Inject that hope straight into my vein with the cytotoxic medication. 

Then I found out, partway through the adjuvant (post-surgical) chemo that could have potentially given me an additional 5% overall survival benefit, and definitely gave me permanent hearing loss and nerve damage, that there was another spot on what remained of my right lung. 

I know it's a terribly overused trope to say "I heard someone screaming. Then I realized...it was me!" I mean, I knew it was me the whole time, and it was not so much a scream as something that started silent then guttural, low in my belly, before it finally crawled out of my throat as a slow groan that ended in a wail. It was the sound of futility, of helplessness, of despair. I did everything they asked. I willingly threw everything to be burnt on the altar of "a cure" - my employability, my quality of life, my ability to confidently stray more than 50 feet from a washroom. I gave them every pound of flesh they requested. And it wasn't enough.

Or was it? More hope:

Lung nodules are common. This one's small. Too small to biopsy. Could be inflammation. Could be scar tissues. But if we say you're stage 4, you get access to more treatment. 

Not as invasive this time. A pill, once a day, that costs more than I like to publicly admit. Side effects, sure, but nothing like what I'd been through. Blood tests every couple of months, quarterly scans of my chest, every six months of my brain. If I made it through three years on this pill with no further activity, I could come potentially come off treatment. Back on Team Curable, baby. 

At the 18-month mark, my oncologist gave me an update. If it was cancer, the doctor explained, they would have expected it to have done something by now. We're downstaging you. Stage 3a resected. Welcome back to the team, we're increasing your dosage of hope, bet that feels good after all this time, eh?

I went wild, middle-aged mom-style. I browsed jobs. I upped my rehab goals. I looked at retraining and pre-ordered some textbooks. We planned our first family vacation in years. I bought pants that fit. I went into my June scan with considerably less anxiety than ever before.

If it isn't obvious where this is going by now, you haven't consumed enough popular media.

For 6 scans, that nodule hadn't done much. Stuck around, in a sucky, stucky way. But that 7th scan, apparently, it decided to make a move. Nothing too big, nothing too obvious. Just a little bit more solid than before. These things can change. It's minor. Still too small to biopsy. A PET scan, just to be sure. This type of scan measures metabolic activity through the uptake of radioactive glucose, and is partly responsible for the myth that cancer feeds off sugar (all cells feed off sugar, cancer is just hungrier). 

I left three messages with the oncologists' office asking when I would hear my results. As part of the vast organizational conspiracy by the administrative staff of the Cancer Agency to completely destroy my mental wellbeing*, not one of these messages made it to an oncologist. The doctor who finally called me fully believed that I already knew. Oh gosh, nobody told you that you'd been kicked off the team again? 

Or was I?

See, there's this hot new concept of "oligometastatic" disease which I'll help you Google but basically

means that there could be a step between local and systemic disease. Sometimes a disease comes back in just a couple spots. Sometimes the cat is only partway out of the bag - just a paw, maybe two - and by jove, in those cases, with the right touch of a new kind of radiation therapy, they can sometimes get the cat back in. 

Peace, love and targeted radiation.

So there I was, new treatment plan in hand, down the rabbit hole of research papers to try to figure out which team I was on. This study looked at people who had multiple tumours at once. This one used a different pattern of radiation. This one excluded people who had been treated with chemotherapy. 

And the more I read, the more I flipped between totally calm and uncontrollably frantic, until I eventually recognized that not only is the in/curable binary useless, but that it also conflated "cure" with "hope"...which was even worse. 

When "hope" means "cure", incurable patients are expected to throw hope away. Now it's a false hope, so-called hopium, right up there with strict diets and special crystals and that one podcast omg you have to listen to it he beat cancer with just mindfulness and a stick. 

I may let them poison me. I may let them irradiate me. I may let them cut me open and poison me some more...but I sure as heck am not going to let them tell me what to feel, goshdarnit it all. 

So I'm trying not to focus on which side of the line I'm on, or which team will have me. I'm trying to spread my hope around. Maybe for a cure, sure, but also: to be able to live a day at a time in a culture that expects long-term, predictable commitment; to understand and accept the limits on my life while changing what I can; to identify and live according to my truest values, so that when my time comes, as it does for every living thing, the pile of regrets is overshadowed by the tower of, if not joy, then at least contentment. 

And maybe, just maybe, for one more pair of pants that fit. 

*Okay, less of a conspiracy, and more of a complete ambivalence towards implementing functional internal communications systems and processes, which is SUPER DUPER FUN for someone who studied this topic at a graduate level and worked on such systems professionally for over a decade and will be over here making slow guttural wails into the void for the rest of her statistically shortened lifespan.